ASSESSING PRIORITIES IN ETHNICALLY DIVERSE CAREGIVERS FOR PEOPLE WITH AGITATION IN ALZHEIMER'S DEMENTIA
Author(s)
Emily S. Reese, MPH, PhD1, Debra F. Eisenberg, PhD2, Heidi C. Waters, MBA, PhD3, Jinyi Wang, PhD4, David Wang, PhD5, Sanjeda Chumki, PharmD6, David Richardson, BA7;
1Otsuka Pharmaceutical Development & Commercialization, Inc., Global Integrated Evidence & Innovation, Princeton, NJ, USA, 2Lundbeck, Conestoga, PA, USA, 3Blue Persimmon Group, Fernandina Beach, FL, USA, 4RTI Health Solutions, Durham, NC, USA, 5Lundbeck, Deerfield, IL, USA, 6Otsuka, Princeton, NJ, USA, 7RTI Health Solutions, Research Triangle Park, NC, USA
1Otsuka Pharmaceutical Development & Commercialization, Inc., Global Integrated Evidence & Innovation, Princeton, NJ, USA, 2Lundbeck, Conestoga, PA, USA, 3Blue Persimmon Group, Fernandina Beach, FL, USA, 4RTI Health Solutions, Durham, NC, USA, 5Lundbeck, Deerfield, IL, USA, 6Otsuka, Princeton, NJ, USA, 7RTI Health Solutions, Research Triangle Park, NC, USA
OBJECTIVES: The rationale for this study was to understand priorities, needs, burdens, and stressors among ethnically diverse caregivers of people with agitation in Alzheimer’s dementia (AAD).
METHODS: A non-interventional, cross-sectional, web-based survey was conducted of adults (>18 years old) residing in the US and caring for someone with AAD (>5 hours unpaid care/week). Quotas were set for ethnic groups to mimic US ethnic distributions. Descriptive analyses summarized responses from the entire sample and by racial/ethnic subgroup.
RESULTS: Of the 200 qualified respondents (67.5% female; mean age 46 years; 56% married; 68% employed), 28% were White, 20% Latino, 17.5% African American/Black (AA/B), 15.5% Asian/Asian American (A/AA), 9.5% Alaska Native/American Indian/Native American (AN/NA), 2.5% Middle Eastern/North African (ME/NA), 2.5% Native Hawaiian/Pacific Islander (NH/PI), and 4.5% endorsed “race not listed.” Most (>90%) felt it was important to keep their loved ones at home, citing self-pressure as the main source of pressure to do so, especially among NH/PI (80%), Latino (78%), and White (76%) subgroups. Cultural pressure and pressure from family were also highly endorsed, especially among NH/PI (60%, 80%), A/AA (65%, 68%), and AI/NA (47%, 53%). Overall, 44.5% of respondents received unpaid help, and 49.5% received paid help. Feeling overwhelmed was the most common reason for asking for unpaid (60.4%) or paid (49.5%) assistance. Over half (52.5%) reported it was very difficult/difficult to seek paid assistance, with 64% reporting financial concerns as the largest barrier, especially among White (76.8%) and AA/B (74.3%) caregivers. When asked what kinds of assistance were needed, caregiver emotional support (66.5% overall; White=73.2%; AA/B=71.4%) and patient emotional support (60.0% overall; A/AA=71.0%; AN/NA=63.2%) were endorsed frequently.
CONCLUSIONS: Informal caregivers face pressures from self, family, and cultural pressure when caring for loved ones with AAD. Only half had help. Most expressed the need for emotional support programs for caregivers and patients with AAD.
METHODS: A non-interventional, cross-sectional, web-based survey was conducted of adults (>18 years old) residing in the US and caring for someone with AAD (>5 hours unpaid care/week). Quotas were set for ethnic groups to mimic US ethnic distributions. Descriptive analyses summarized responses from the entire sample and by racial/ethnic subgroup.
RESULTS: Of the 200 qualified respondents (67.5% female; mean age 46 years; 56% married; 68% employed), 28% were White, 20% Latino, 17.5% African American/Black (AA/B), 15.5% Asian/Asian American (A/AA), 9.5% Alaska Native/American Indian/Native American (AN/NA), 2.5% Middle Eastern/North African (ME/NA), 2.5% Native Hawaiian/Pacific Islander (NH/PI), and 4.5% endorsed “race not listed.” Most (>90%) felt it was important to keep their loved ones at home, citing self-pressure as the main source of pressure to do so, especially among NH/PI (80%), Latino (78%), and White (76%) subgroups. Cultural pressure and pressure from family were also highly endorsed, especially among NH/PI (60%, 80%), A/AA (65%, 68%), and AI/NA (47%, 53%). Overall, 44.5% of respondents received unpaid help, and 49.5% received paid help. Feeling overwhelmed was the most common reason for asking for unpaid (60.4%) or paid (49.5%) assistance. Over half (52.5%) reported it was very difficult/difficult to seek paid assistance, with 64% reporting financial concerns as the largest barrier, especially among White (76.8%) and AA/B (74.3%) caregivers. When asked what kinds of assistance were needed, caregiver emotional support (66.5% overall; White=73.2%; AA/B=71.4%) and patient emotional support (60.0% overall; A/AA=71.0%; AN/NA=63.2%) were endorsed frequently.
CONCLUSIONS: Informal caregivers face pressures from self, family, and cultural pressure when caring for loved ones with AAD. Only half had help. Most expressed the need for emotional support programs for caregivers and patients with AAD.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR176
Topic
Patient-Centered Research
Topic Subcategory
Patient Engagement
Disease
SDC: Geriatrics, SDC: Neurological Disorders